When Layla was born, her mom Desiree started to notice that something was not right – Layla’s legs were floppy and would turn outward like a frog’s when she tried to use them. Also, she wasn’t getting stronger. Then Layla stopped nursing because she was struggling to swallow.

Layla was diagnosed at 10 weeks old with spinal muscular atrophy, or SMA, a devastating disease caused by a defect in a gene – known as SMN1 – that generates the protein required for the survival of cells that control essential voluntary muscle activity such as breathing, swallowing, speaking and walking.1 Without these motor neuron cells, muscles get progressively weaker, eventually leading to the inability to perform these basic functions.1

“I don’t know how long I stayed in the doctor’s office after receiving the diagnosis, holding Layla and crying,” says Desiree. “She was smiling, but our world was forever changed in that moment.”

SMA is the number one genetic cause of infant mortality, affecting approximately one in 10,000 babies globally.1,3 There are multiple subtypes with varying levels of severity. Layla has Type 1, the most severe form of the disease that accounts for 60 percent of all SMA cases.4 Babies with SMA Type 1 have difficulty controlling their head, breathing and swallowing.5,6 These infants do not reach normal developmental milestones and are dependent on their caregivers for even the simplest of movements, like repositioning their bodies and sitting up.3 Sadly, without treatment the majority of babies with SMA Type 1 pass away or need permanent help breathing by the age of two.7 SMA is a disease that significantly affects the lives of not just the diagnosed, but also the loved ones and caregivers on whom they rely.

For Layla, who is now two years old, “A good day is a boring day because that means she is comfortable,” explains Desiree. “It’s the small victories that count – like going all day without hearing a sound from Layla to then hearing her babbling in response to me washing dishes.”

Recent advancements in treatment, as well as promising therapies on the horizon, hope to change the heart-breaking trajectory of SMA – but early diagnosis is critical and increases the chances of rescuing the motor neuron cells before they are lost. Once they are gone, they cannot grow back.8 In recognition of this, the U.S. Department of Health and Human Services recently recommended that SMA be added to the list of tests performed on babies immediately after birth in order to make the diagnosis as soon as possible. Now it is up to each individual state to adopt this national recommendation and add SMA to their newborn screening panels.

“With new technologies and treatments, the future looks so much brighter for people with SMA,” says Desiree. “Raising awareness of SMA is a key part of continuing to make those advances – for Layla and for future generations born with SMA.”

To learn more about SMA, newborn screening, and what you can do to help raise awareness, please visit Cure SMA: http://www.curesma.org/

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